Hale Zukas: They Hate Us Because We’re Pretty

5 min read

Hi, I’m Rick Barron, your host, and welcome to That’s Life, I Swear

His name was Hale Zukas. Those who knew him well saw him as a pioneer in national disability rights who helped redefine accessibility for people with disabilities. On November 30, 2022, Hale passed away due to heart failure in his favorite city of Berkley, California. He was 79 years old.

Let’s jump into this 

Hale Zukas, was born with cerebral palsy, which significantly impaired his mobility and speech. The medical establishment advised Zukas’ mother that it was best if he were institutionalized. These doctors didn’t know Hale’s mother very well. Her mindset was like hell, her son would be placed in an institution. 

Hale’s mother got fed up with doctors trying to convince her of a quick fix to solve her son’s problem. Zukas credits his mom for pushing for his education which he achieved. He attended UC Berkeley, where he majored in mathematics and studied Russian. 

Zukas's communicating board. Courtesy of: Joan Leon

Throughout most of Zukas’s life, he navigated from one place to another in a motorized wheelchair. His means of communicating was primarily through the use of a helmet-mounted pointer and a sheet on his wheelchair tray that displayed the alphabet plus several frequently-used whole words

Due to his cerebral palsy, Zukas's speech was hard to understand. During the times he traveled to meet with government officials or other groups, he had the help of a co-worker or personal assistant who translated his speech and would supplement it with reading from his letter/word board.

While attending Cal, Zukas joined a student group known as the Rolling Quads, which advocated for the rights of people with disabilities. But Zukas didn’t stop there. He helped establish the campus' Physically Disabled Students program.

Hale Zukas with Nina Sprecher,friend & attendant for 42 years. Courtesy of: Lyndia Gans

After graduating in 1971 with honors, Zukas started his ongoing journey to address those who were handicapped. He aimed his energy at being an advocate for those who needed services and the elimination of architectural and transportation barriers in communities locally and nationally.

He lobbied for California’s In-Home Supportive Services (IHSS) Program, the first consumer-directed program to provide attendants in the home to people who needed them. This program has since become partially Medicaid-funded and a model for the nation.

As I researched the many accomplishments of Hale Zukas, I was impressed by his determination to ‘get involved’. Using a wheelchair did not deter him from being the voice for those who were handicapped. If anything, it enhanced his resolve not to let anything stop him.

The list of achievements Zukas’s accomplishments is long, but allow me to call out some of the big ones that stick out in my mind.

In 1972, Zukas, fellow students Ed Roberts and Jan McEwan Brown, and community members joined to form The Center for Independent Living, Inc. He served as the CIL's first Community Affairs Coordinator and held that position until 1982.

The Center provides people with skills, knowledge, and resources that empower them to eliminate damaging and stereotypical notions of disability so that they can strive toward realizing their full human potential.

Section 504 of the Rehabilitation Act of 1973 (“Section 504”) is a civil rights law that prohibits discrimination based on disability in public or private programs or activities receiving federal financial assistance from the U.S. Department of Education.

Hard to believe there were protests for this act to be ratified, let alone having to create a law to ensure such injustice should not happen to anyone.

You guessed it, Zukas was one of the leaders of the Section 504 movement. He participated in the April 4, 1977 20-day sit-in at the federal building in San Francisco.  Additionally, Zukas was one of many San Francisco Bay Area activists who successfully lobbied the Carter Administration to release its regulations.

I’m sure you’ve seen what I’m going to describe in your neighborhood or public streets. I’m referring to street corners that have a curb ramp.  It’s a solid ramp graded down from a sidewalk's top surface to the street's surface. The design is for addressing pedestrians in wheelchairs to have an easier time getting onto the sidewalk. The name for this design is curb cuts.

Zukas championed the first curb cuts in Berkeley. Later he persuaded the Bay Area Rapid Transit (BART) system to become fully accessible for the disabled. He co-founded the BART’s accessibility advisory group in 1975 and even designed the buttons you see inside the BART elevators. Zukas saw that the buttons were placed at a height reachable by wheelchair users.

Wheelchair designer Ralph Hotchkiss , a wheelchair user himself, described Zukas as a “wild man” who was thrilled by the sound of a speeding wheelchair.

Ralph Hotchkiss in his workshop. Courtesy of: whirlwindwheelchair.org 

Hotchkiss, who received a MacArthur “Genius” grant for his work designing wheelchairs, met Zukas in the early 1970s. They toured the Washington, DC subway together so Zukas could write a report on handicapped access for Congress.

As Ralph recalled, and I quote:

“Before I knew it, I was hanging from the back of his powerful wheelchair hurtling through Washington, wondering if I could make it there alive,” said Hotchkiss, confined to a slower wheelchair. That day, Zukas got into the “dirt of the system” and “smashed it up as best he could”. 

End quote.

Ralph saw Zukas as someone who would have taken risks every day if he had lived for 1000 years. 

In 2017, a documentary short film, titled ‘Hale’, was directed by filmmaker Brad Bailey. Mr. Bailey, who submitted the film as a thesis project for U.C. Berkeley's Graduate School of Journalism, earned a Student Academy Award and his Journalism degree.

The movie is about 21 minutes long and describes Zukas’s life. As you watch the movie, you’ll see some of the various events he participated in to fight for the disabled. You’ll see how he made his way in the world with his wheelchair with a stick and spoke with his word board. Zukas didn’t believe in limitations and always had a high degree of optimism. Pay special attention to the regiment Zukas started his day, every day.

Hale Zukas loved speed. Living in Berkeley, Zukas, he would maneuver his high-speed wheelchair and his trademark helmet, racing down Telegraph Avenue at a sprint pace, with his gray hair flapping in the wind. Fear was not part of Zukas's vocabulary. Living his life to the fullest was his daily goal.

As you watch the movie, I challenge you not to get a knot in your throat and get tears in your eyes. I did, and I’m not ashamed to admit it.

What can we learn from this story? What’s the take away

Some question if they can make a difference. Some people feel they can’t do it because it's too hard.

Don’t ever let somebody tell you, you can’t do something, not even you. You have a dream, a cause, make it happen. Zukas did.

Some feel they can’t do something themselves, so they want to drill in your head you can’t do it either. Zukas ignored those people. 

For Zukas, his life was to make a difference for those who didn’t have a voice. If you want to make a difference, then do it. 

Zukas did, and he did it from a wheelchair. Enough said.

Well, there you go. That's life, I swear.

For further information regarding the material covered in this episode, I invite you to visit my website, that you can find on either Apple Podcasts/iTunes or Google Podcasts, for show notes calling out key pieces of content mentioned and the episode transcript.

As always, I thank you for listening. 

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